Online tool for tracking family health history gets upgrade

January 14, 2009
By Sandy Kleffman

Consumers now have a new tool to organize and share their family health histories. The U.S. Department of Health and Human Services on Tuesday released an updated version of its "My Family Health Portrait."

After spending 15 to 20 minutes completing an online profile, people can more easily pass information along to relatives or physicians who can use it to personalize care, officials said.

"Family health history is an important medical tool," said Acting Surgeon General Steven Galson. Because it provides a mirror on genetic inheritance, it indicates how susceptible people may be to developing various diseases.

Physicians can use this information to watch for early warning signs and recommend ways to reduce risk.

Despite these benefits, family health histories are an underutilized resource, experts say.

Patients often hurriedly fill out the information as they sit in a doctor's waiting room. Doctors are not reimbursed for the time they spend developing such a history with a patient, which adds to the rush.

The online form "gives people the means and the time to actually gather this information," Galson said.

The surgeon general has had a health history tool available since 2004, but it did not contain standardized features that make it easier for doctors to incorporate the information into electronic patient records.

The software code will now be openly available so that other health organizations can customize it with features that meet their needs, said Robert Kolodner, national coordinator for health information technology.

For those who are worried about privacy, Galson noted that the information does not become available to the federal government. After filling out the form, users download it to their computers so they have control over its use.

Consumers can put it on a disc or flash drive to share with relatives and physicians. Or they can e-mail it if they have a secure e-mail connection. Experts cautioned that sending such information via standard e-mail might enable others to view it.

The new tool has a feature that will enable relatives to use the information to develop their own family health trees.

The Lance Armstrong Foundation, a cancer advocacy group, announced that it will link to the site.

"A strong family health history tool can be an important element for guiding medical decision-making, especially in the area of cancer screening, prevention and early detection," founder and Tour de France champion Lance Armstrong said in a written statement.

As the nation moves toward widespread use of electronic health records, it needs to start with a good foundation of information, Galson said.

Sharing family health histories with relatives may enable them to discover things they did not know, experts say.

There is considerable demand for cancer information resources in New Zealand, with a third of women and a quarter of men deliberately searching for these over the past year, according to a new University of Otago study.

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